Books About LBD Care Partnering

This week’s blog is about the books about LBD care partnering. Pat Snyder offers several in her video. The titles below are links to each of the books she recommends along with a few comments.

Here is Pat's video.

Books that Pat recommended (except for ours):

• Treasures in the Darkness by Pat Snyder. Pat’s story is a must read, especially for those just starting out on their LBD journey.
• Facing LBD Together by the LBDA. This free booklet presents the basics and comes with Medical Alert Wallet Card.
• Dementia Care Partners Workshop by Dr. A good way to learn the basics about dementia care partnering.
• Keeping Love Alive as Memories Fade by Deborah Barr. Practical suggestions for using aspects of your loved one’s past to help them function better in the present.
• The 36-Hour Day by Nancy L Mace and Dr. Peter V Rabins. This is the first book Jim read when he started on this journey over 20 years ago. Of course, it has been updated many times since them.

These are the Christian daily devotional or meditation books recommended by Pat. If you want to find something more specific to your own spiritual beliefs check with your spiritual leader, but as Pat says, don't neglect this part of your journey--a healthy spirit makes the other parts of the journey easier.

• Creating Moment of Joy by Jolene Brackley.
• Grace for the Unexpected Journey by Deborah Barr
• Jesus Calling by Sarah Young.
• Jesus Always by Sarah Young.

Pat also recommends two of our books. Links to these books are as always, at the bottom of this blog entry.

• Managing Cognitive Issues. This book explores the early symptoms and diseases such as Parkinson’s that often progress into LBD and helps you know what to look for and how to deal with it. It also has a huge section on alternative therapies and how to use them.
• Responsive Dementia Care. Pat said this is her favorite of all our books and yes, it is mine too. Dealing with dementia-related behaviors is often the most difficult job for a LBD care partner. Add to this the fact that drugs can often make the situation worse instead of better. This book explains how these dementia changes the brain and offers a variety of methods, both with and without drugs, for dealing with the resulting behaviors.

There are a couple of our books that Pat didn’t mention because she doesn’t have them in her library. (We’ll have to change that!)

• A Caregiver’s Guide to Lewy Body Dementia. Published in late 2010, this was the primary book for LBD caregivers for several years. Even today, with many other books out there, it continues to be a favorite of LBD support group members.
• Lewy Body Dementia, A Manual for Staff. Written for staff, this book includes the same basic information as the Guide does. However, it also includes a condensed version of the behavior management information in our Responsive Dementia Care book. We priced it reasonably so that care partners could give it to their helpers as gifts.

For more recommendations, you can visit LBDA.org and check out their books page.

For more information about Lewy body disorders, read our books:
A Caregiver’s Guide to Lewy Body Dementia.
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia, A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Care Partner Finances and COVID

For those of you who have been enjoying Pat's videos, she will be back next in four week. For now, we are taking a break to discuss finances, often a difficult subject for the dementia care partner.

Dementia care tends to be very expensive and LBD care can be even more so. Therefore, I’ve invited Judy Baker, of the Senior Caregiver Alliance to provide you with some literature about finances with a special focus on the effect that COVID might have on them:

Retirement Insecurity in the time of COVID. Many of us are already retired, or are seriously considering retirement. This article is an overview of this subject.

Financial Literacy for Older Adults. This article gives an overview of those financial situations that retirees tend to face and then offers some suggestions about how to organize your retirement finances.

Coronavirus Information for Older Adults and Caregivers. This article is perhaps the most valuable and useful of all of Judy’s suggestions. It contains a long list of resources about almost anything COVID related and how it affects you and your loved one.

Coronavirus Impacts on Older Workers. This article is mainly for those of you still in the workforce, and most applicable to those who are caring for a parent while still trying to earn a living.

The next blog will be one about making sure your financial Power of Attorney is good.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Medication Mantras

In the third of a series of videos about LBD and the medical system, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks some more about LBD and medication. Because she doesn't list the mantras until the end, I'm listing them here so you can connect each one with what she says about it.

• Make one change at a time
• Start low
• Go slow
• Learn what drugs to avoid
• Be excited about what drugs are available

Here's Pat's 7.5 minute video: Medication Mantras

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Avoid These Drugs!

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, lasts over 18 minutes, but it is well worth watching. LBD can be very sensitive to so many drug and all LBD care partners need to know about these. In fact, you will want to take notes! And then you will want to go to some of the sources she recommends and learn more. And then you will want some references that you can refer to over and over.

I've listed her recommendations here along with some of my own:
People's Pharmacy Anticholinergic Drug List

Treating and Diagnosing Lewy Body Dementia

Beers Criteria, 2019 version

I also recommend our book, Responsive Dementia Care, which has a huge chapter on drug sensitivity and management as well as several chapters on a variety of non-drug options and alternatives.

Here is Pat's video: Avoid These Drugs When You Can with Lewy Body Dementia
Next week: Pat's video about Medication Mantras.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

LBD and the Medical System

The next three week's videos by Pat Snyder, author of Treasures in the Darkness and LBD teacher, will be about dealing with the medical system and drugs. In this first one, Pat takes a little over eight minutes to talk about the LBD and the medical system in general. She makes some very important points:

• Find a diagnosing and treating doctor who respects you as a part of the treatment team.
• Avoid emergency rooms and hospitals because the staff all too often does not know how to treat our loved ones in a way that supports them instead of damages them.
• Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment.

Here's Pat's video: Lewy Body Dementia Diagnosis? Here Is Some Hope!

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Summer Tribulations

We are starting out summer schedule this month. While we are in a stay at home mode like most of the rest of you, we aren’t out, finding new material or meeting people with stories to share. This means that my “creative juices” don’t get triggered as much. We are also updating our computers and so I’ll be spending my time learning new programs and systems.

Today, I’m writing about the times we are in, where many things have combined to make a care partner’s already difficult job even more difficult.

• Many of you who are already fighting your own battles with LBD. Who needs more? But there is more and it keeps coming!
• Covid19 had caused issues for each of us: lack of supplies, poor access to medical help and loss of contact with family and friends. It has hit our economy so that many of you may be finding it difficult to pay bills. Perhaps the most difficult is the poor if any access to our loved ones in care facilities.
• Then we have a year where summer isn’t even here yet but temperatures are already heating up, bringing fires that cause evacuations and sometimes, permanent loss of homes. In other places, hurricanes and other weather-related are causing the same kind of problems.This would be bad enough in normal times but trying to stay safe in the Covid era when you are homeless becomes impossible. Trying to care for a loved one with LBD is made even more difficult when you can’t place them in a care facility until you can find a new home.
• Now add the unrest with the protesters. We support their concerns and have been thrilled that many have chosen to protest peacefully and that in many cases, the police are supporting rather than fighting the protesters. We are appalled at the rioters and looters that give the protesters a bad name and damage their cause. But the unrest makes it more difficult for those of you caring for loved ones to get out of your home to do shopping or do other necessary errands. Just one more tribulation to add to an already long list.

So those are the negatives. What are the positives? Sometimes, they are hard to find but I believe that such adversity helps us to better appreciate what we do have. For each of us, that list is going to be different. Do you have a safe, comfortable home to stay in? Do you have stores that deliver or stay open at extra hours? (We go shopping now at 6am!) Do you have air conditioning? Do you have family or friends who show up anyway and help out? Do you have enough to eat, a place to sleep? Do you have a computer and are you learning how to do Zoom meetings? How to learn via pod casts? How to use YouTube? Take some time today and find at least three things you are grateful for. Then think about these…and possibly more!...just before you go to sleep tonight.

Finally, as a part of our summer schedule, I invite anyone who is interested to submit a 300-800 article as a guest blogger. Here are the requirements:

• The content must be about dementia or dementia caregiving.
• Articles about LBD and LBD caregiving are preferable.
• Articles must not be sales vehicles for anything. I always delete any comments that are testimonials for herbal or drug cures. This goes for guest articles as well.
• You can discuss generally something that people might buy, for example, the “Intelligent” speakers that Amazon, Google and others sell. If you mention anything by name, you need to mention at least three, share what you like about each and provide references for all of them.
• I will proof the article and will usually make some changes to fit our format. I will always send it back to you for approval before I post it on the blog.
• I will always add a paragraph as introduction and often, I will add comments within the article that are clearly from me.

I hope I some of you will send me some articles!
Two weeks from today, we start another series of YouTubes by Pat Snyder. She has been doing many of these and had developed a good following. We are honored to have her as our guest YouTube blogger!

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Showtime and LBD

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, is short, less than 5 minutes. But it speaks to a very important issue. Showtime, where a person living with LBD appears more normal for a period of time, is a symptom that can make diagnosis and treatment difficult. It can cause family members to doubt your stories about difficult behavior. Pat makes some very good suggestions for dealing with this symptom.

I'd like to add that your loved one has no control over when Showtime comes and goes. It just happens. We as humans all have urges to please people we respect, such as doctors and visiting family members.  You and I can choose to act on those urges or not. Our loved ones can't. They have the urge and they act. Even though the behavior is subconscious, appearing "normal" is hard, exhausting work. Once it ends, your loved one will probably sleep for hours.

Pat recommends in her video that you go back and view her previous video on the Five Moving Parts (date) for more information about how Showtime comes about. I'd also recommend our books, especially Responsive Dementia Care, which focuses on behavioral issues. Both are great for sharing with others as well.

To watch this week's video, click on the title: Lewy Body Dementia and "Showtime"

Next week, Pat will speak about choosing a doctor and getting a diagnosis.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.